Diet and nutrition

My 7-year-old son, Cayden, started seeing a gastroenterologist (gastrointestinal, or GI, specialist) when he was just a baby. Cayden was diagnosed with infantile-onset Pompe disease when he was 1 month old, becoming the first baby in Pennsylvania to be diagnosed with the condition via newborn screening. After the…

Our 6-year-old child, Geno, who was diagnosed with Pompe disease via newborn screening, has for years told classmates he can’t eat candy. During snack time, at friends’ birthday parties, or holidays like Halloween, sometimes he’ll say he’s allergic to it. Luckily, we have a great group of kids…

My 6-year-old son, Cayden, has been using a feeding tube since he was a newborn. Although I feared the tube at first, I’ve learned to be thankful for its benefits. Cayden required a feeding tube as a result of symptoms related to his infantile-onset Pompe disease; in…

Parents never want to see their children experience anything hard or painful. Yet I can recall many times when I’ve had to put my 6-year-old son, Cayden, through something difficult for his own good. One of my memories from his early years is when he had to get a…

My 5-year-old son, Cayden, has seen a nutritionist his entire life. In his younger years, this was important because Cayden was underweight. Recently, he has gained weight, but the visits are still necessary because he’s tube-fed. Thankfully, Cayden is able to see his nutritionist at the same time as…

From the time he was born four years ago until now, my son, Cayden, has struggled with eating orally. Because of his infantile-onset Pompe disease, Cayden has weak muscles all over his body, including his mouth and the muscles involved in swallowing. He can’t swallow properly and often would…

For my diagnosis day celebration last week, I indulged and had a doughnut. We also celebrated Thanksgiving early with some apple and pumpkin pie. I really do enjoy eating desserts. But when I received my diagnosis of late-onset Pompe disease four years ago, I learned I needed…

A diet combining an oral ketone precursor — a molecule being studied as a dietary supplement — and a cocktail of natural antioxidant molecules boosts the efficacy of enzyme replacement therapy (ERT) at maintaining muscle strength and motor function in a mouse model of Pompe disease, a study…

Antioxidants can increase the effectiveness of enzyme replacement therapy (ERT) for Pompe disease caused by oxidative stress, the damage in cells or tissues by reactive oxygen molecules, according to a study in cells and mice. The findings also showed that enhancing autophagy — the destruction of damaged or redundant…

Thanksgiving and Christmas are often associated with two things: food and family. But what about those who can’t eat? My 3-year-old son, Cayden, is picking up on the fact that he cannot eat orally. With the holiday season just around the corner, I’m worried about how this will affect him.